Project Description

Challenge

While Canadian scientists are leaders in Cerebral Palsy research, effective communication and geography are barriers to creating connections that could lead to meaningful scientific discoveries. Additionally, knowledge of the root causes of CP is at an early stage. The lack of uptake of new evidence-based medical treatments highlights the need for better knowledge dissemination to the public.

Project Summary

Creating these connections in the form of knowledge translation and exchange was central to the Cerebral Palsy Demonstration Project. The Knowledge Translation and Exchange (KTE) Strategy had several goals: to expand the network of stakeholders, to facilitate knowledge exchange with stakeholders, to transfer effective KT strategies from the other NeuroDevNet Demonstration Projects, and to enhance public awareness.

One of the core aspects was the CP Registry, which enabled a common platform to share knowledge translation and training opportunities with stakeholders, increasing national capacity.

The Knowledge Translation team also shared new findings through newsletters, publications and conference presentations. They posted discoveries and publications on Canadian websites, including Childhood Disability LINK and NeuroDevNet. The KTE team implemented annual conferences on Cerebral Palsy in Montreal, Toronto and Edmonton.

The CP Canada Network has gathered key CP associations in different provinces. Drs. Shikako-Thomas and Majnemer also created another forum for knowledge exchange,  Child Health Initiatives Limiting Disability through Leisure, known as CHILD LeisureNet. It involved over 150 stakeholders, including policymakers, community organizations, clinicians, and families and youth with disabilities.

Result

As part of this initiative, the KTE team developed the Jooay app. This app helps youth with Cerebral Palsy and other disabilities access information about leisure opportunities in their communities.

By the end of Cycle I, the Cerebral Palsy Demonstration Project was able to unite with all Cerebral Palsy associations across Canada – the first such partnership with researchers and stakeholders in the nation and possibly the world.

Team

Investigators

Annette Majnemer,  McGill University (KT co-lead)
Keiko Shikako-Thomas, McGill University (KT co-lead)
Michael Shevell, McGill University
Darcy Fehlings, University of Toronto
John Andersen, University of Alberta
Jerome Y. Yager, University of Alberta
Michael Fehlings, Toronto Western Hospital; University of Toronto
Stephen Scherer, Hospital for Sick Children; University of Toronto
Marie-Pierre Dubé, Montreal Heart Institute; University of Montreal

Collaborators

K.S. Joseph, BC Children’s Hospital; University of British Columbia
Helly Goez, Stollery Children’s Hospital; University of Alberta
Bryan Kolb, University of Lethbridge
Derek van der Kooy, University of Toronto
Andras Nagy, University Toronto
Kaye Spratt, Sangamo Biosciences Inc
Greg Stanisz, University of Toronto
Alexander Velumian, Toronto Western Hospital; University of Toronto
Christian Beaulieu, University of Alberta
Alan Evans, Montreal Neurological Institute; McGill University
Stephen Miller, BC Children’s Hospital; University of British Columbia